Employers should know about the fatigue you suffer when you have young onset Parkinson’s. I am medically retired, and I worked for 1 year after my diagnosis.

I did not feel supported by my employer/co-workers. The most debilitating issues with regards to my working capacity were slowness of movement, fatigue/lack of sleep, muscle stiffness/rigidity, standing and walking, sitting for long periods, handwriting, anxiety and depression, constipation and bladder control, problem solving and memory issues, speech and communication. The most difficult time of the work day was in the morning. Strategies that may have been helpful to support me to stay in the workforce longer could have been flexibility to work around fluctuating symptoms, modified work space, writing aids such as voice-to-text software to reduce the need to type and reduced hours. No formal process was undertaken to determine my work capacity and support. I could not do the job.

Regarding disclosure of young onset Parkinson’s to an employer, I would not, in my case. I was a casual employee and I did not seek advice about my rights. In my case, I was employed as a train driver and no other work was available as a casual.